Megan is the mom to Will, an amazing three-year-old heart warrior. Back in December Dr. Fraser and the team at Dell Children’s repaired Will’s mitral valve cleft (MVC), which was causing severe mitral valve regurgitation.
Yesterday we were honored to be asked to The University of Texas – San Antonio Medical School to give a presentation on the ICU parent perspective for pediatric residents and medical students.
We discussed things like how much continuous time parents actually spend in the hospital when their child is inpatient, parent involvement, bedside manner, family interactions, and factors like stress/anxiety/PTSD. We’re hopeful that by sharing our views we can bridge the gap with communication and help create an understanding for both sides. It’s a hard situation from both perspectives — the doctors AND the parents, especially in the ICU.
Did you know that doctor burn-out is also a huge problem? Doctors lose sight of why they wanted to become doctors in the first place and we wanted provide real stories and insight about how they’ve changed our lives. Without our amazing doctors and medical teams, our little girls wouldn’t be here today. We have so much gratitude and love in our hearts for everything they do. They work long hours and make sacrifices in their own lives. We count on them every day and we hope they know just how important they really are to our families.
We’ll wrap this series up by sharing our interview which aired today on the news! Click here to watch! Take a minute to check it out and share with someone you know. Maybe it’s a fellow heart parent, another heterotaxy family, or a friend who knows nothing about congenital heart defects. Let’s make a difference with CHD awareness!
We hope you enjoyed our series this week on The 5 Love Languages of CHD Families: Words of Affirmation, Acts of Service, Gifts, Physical Touch, and (Quality?) Time. Our goal was to inspire, teach, and spread awareness. While these posts use personal experiences as heart parents, we know anyone who is struggling with a medical condition or a serious diagnosis can relate.
(Quality?) Time Spent
It’s hard to focus on the positive when so much is going wrong. But there are positives, even if they’re silly or lighthearted. Today’s post is more upbeat and will hopefully give you a much needed smile.
Quality Time Spent…
…giving our warrior meds means we now have the skills to use and draw up a syringe.
…fortifying bottles means we’ve upped our math game and can calculate the exact kcal it needs to be.
…in the hospital means we know how to sleep in hospital chairs and how to survive on bad coffee.
…waking up extra times to give feedings or meds means we get to hold our warrior just a little bit more.
…going to tons of doctors appointments means that medical abbreviations just roll off our tongue (Cool skill! Not to mention your calendar is super organized!)
…staying in quarantine because of germs means you have an excuse to get out of social obligations.
…in the car traveling to medical care means more time talking as a family.
…relocating to a different city to be at a better hospital means you get to try new restaurants.
…wiping everything down with anti-bacterial wipes means your kid understands the value of cleaning.
…with a hospital monitor means you know what an appropriate respiratory rate, blood pressure reading, and sat range is for your child. (And what that even means!)
…at the Ronald McDonald House means bonding time with other families going through similar challenges.
…away from your home and pets means you don’t have to pick up poop. At least for a little while.
…worrying and crying about your heart warrior means they are so very, very loved.
What are your positives?
The 5 Love Languages of CHD Families: Physical Touch
I had to wait an entire day before I was able to hold my daughter for the first time and it felt like eternity. Unfortunately I had severe preeclampsia and was on a magnesium drip for the twenty- four hours following the emergency c- section of my heart warrior. Normally this wouldn’t be a big deal because they would just bring the baby to you as you sat in the recovery room with the IV. That is, unless your baby was whisked off immediately after delivery and taken to the cardiovascular ICU for intervention. I asked my husband to stay with my daughter and I went back to recovery by myself. All I wanted was to hold my little girl.
As many heart parents know, some days you aren’t able to hold your child. They might be on a ventilator, have an ART line, have recently come out of surgery, are too sedated, and a slew of other reasons. Luckily my daughter was fairly stable for the first couple days so I was able to hold her; I know many parents who didn’t even have that much. Sometimes it would take two or three nurses to help navigate the multiple IV poles and multiple pumps. The first time I held my daughter I was afraid and nervous. One wrong move and it might pull on a line. But we spent hours holding our sweet baby; hours, and hours, and hours. Because sometimes that’s all you could do. We did our best to get our daughter to the No. 1 pediatric cardiology hospital, but much of our time was spent with the “wait and see” mentality. It was hard. So hard. And all we could do was hold our baby and make sure she knew how much she was loved. When we had days, or even weeks that we couldn’t hold her, we held her tiny little hand or embraced her little bitty foot. We couldn’t snuggle her or put her in a baby wrap. We couldn’t really bathe or feed her. That small amount of physical touch was all we had.
Parents are well-aware of the nurturing that can be done while holding your baby. There’s advice out there encouraging “skin-to-skin” or “kangaroo care”, but what if you couldn’t hold your baby that way? What if you couldn’t even hold your baby at all? I think this is one of the hardest things to go through as a heart parent. Even as they get older, or bigger, or stronger, you just want to hold them and tell them it will be alright.
The 5 Love Languages of CHD Families: Acts of Service
When a family member or friend receives a diagnosis that their child will be born with a heart defect, you may not know what to do. It’s easy to retreat because it might be uncomfortable, but sometimes it’s even more uncomfortable for us to ask for help. Here’s a list with some suggestions:
1. Offer to help take care of household things while they’re in the hospital with their warrior. Hospital stays can be lengthy and it’s overwhelming to think about childcare for the other children, pet sitting, or general house upkeep. Some families are lucky to have a network of people, but others might not have any support at all.
2. Help run errands. This doesn’t seem like it’s a big one, and you may be overwhelmed with your own errands, but consider this: some kids need to be in quarantine while awaiting surgery/recovering from surgery/are seriously immune-compromised, and parents can’t take them out in public. This isn’t just for days — it could be months, especially during flu season. It’s hard for heart parents to get out. Not to mention, many hearts kids have oxygen tanks or special strollers that are cumbersome. Likewise, with long hospital stays, you are basically living there and it’s hard to run out for an errand. A heart parent might desperately need some ibuprofen, but can’t muster the strength to leave their unstable warrior that day.
3. Visit us in the hospital. Many times our warrior might be immune-compromised and most hospitals have visiting restrictions in the ICU, but parents might need an outlet. Please know that we can’t commit to a long visit, but stop by and take a 15-minute walk around the block with us. We’ll be anxious to leave our warrior, but it would be nice to see a smile. (And right before you come, shoot us a quick text and ask if there’s anything we can bring. It could be a box of tampons or a couple breakfast tacos, but we will be ever so grateful.) BIG NOTE: WE LOVE YOU DEARLY, BUT PLEASE DON’T SHOW UP UNEXPECTEDLY. There are days we just won’t feel up for a visit. Hospital life is rough and please don’t be offended.
4. Help organize an event to celebrate our heart warrior. If our baby is diagnosed prenatally, maybe it could be a small baby shower or photo shoot. One of the most meaningful things our friends did was throw a big celebration for Eloise once her big second surgery was over. These kids are fighters and they deserve so much celebration.
5. Volunteer locally at the Ronald McDonald House or volunteer with heart organizations. Call your closest Ronald McDonald house and ask if you can provide a meal for families every once in a while. Get involved with local programs who help these families and kids. Talk to the social workers/community outreach at your local hospitals and ask how you can directly help.
Thank you for loving us and taking sweet care of our families. An act of service will never go unappreciated. It means more to us than you’ll ever know.
To wrap all these thoughts up about acts of kindness, here’s a story from Patty about her sweet friends:
While sitting in our apartment alone for the first time with my heart warrior, I began a text conversation with my girlfriends. We had moved to Houston for our daughter’s care and I desperately missed my Austin family. They were at a gathering together for a celebration — one of the many I have missed. I sent a simple four word text: “I am so lonely.” It was late in the evening and we were hours apart, but I will always be grateful for the response: “We are on our way.” Within a few hours and in the middle of the night, my friends came to rescue me. This was an act of love I’d never expect to see from friends during that time. In this case it’s extreme, but I consider myself very lucky to have loyal friends crazy enough to have done that.
Has someone done something for your family or heart warrior that will stay with you forever?
The Five Love Languages of CHD Families: Words of Affirmation
Families dealing with a CHD diagnosis need to hear words that support and encourage them through their journey. So much love can be given through words. It’s understandable that finding those words can be difficult when the situation is almost impossible to relate to. So here is what happens: You might say, “I’m sure everything will be fine.” or “Everything happens for a reason.” Even though intentions are good, it isn’t what we want to hear. Honestly hearing the words “That f****** sucks” seems to be more comforting because it shows pure honesty. It seems counter intuitive in terms of wanting to be supportive, but those of us that have been through this journey crave that kind of honesty. We already know we need to stay positive. We already know we need to pray (if we’re the praying sort). We already know that you know someone else who knows a person, who knows another person, who has a friend who has gone through the same thing. But it’s not the same, it’s just not.
Keep calling and sending those texts. Please know that even if we’re too overwhelmed or unable to respond to a text or call, it means so much to us that you’re thinking about our family. Sometimes with long-term hospital stays, we are so emotionally and physically drained that days fly by and we haven’t responded. Caring for a child with CHD — in or out of the hospital — can take every ounce of energy, and sometimes it’s just hard to respond.
If you can’t think of anything to say because nothing sounds right, remember that the reminder that you are loved is always nice to hear. “You and your family are so loved” can have just as much impact as a literal embrace.
Congenital Heart Defect Awareness week starts TODAY! Besides learning about the staggering number of babies born each year with a CHD (40,000. Forty THOUSAND!!), it’s important to have a little insight about what these families go through and how to support them. We also need this awareness to increase research funding to help these sweet children. They may be fixed temporarily, but they will NEVER be cured; this is a life-long struggle. This awareness may not mean much to you personally, but every day there are kids fighting for their lives. These kids are your neighbors. They are your friends’ children. They are kids in school with your children. Nieces. Nephews. Brothers. Sisters. Grandchildren. Unless a cause directly affects you, why does it stay on the back burner? Currently there are MILLIONS of heart warriors; for them there isn’t a back burner, it’s everyday life. Awareness starts NOW. How can you help?
In honor of CHD week and February as a month of love, we offer up THE FIVE LOVE LANGUAGES OF CHD. Each day this week, starting tomorrow, we will reflect on a new topic and how it relates to the world of congenital heart defects.
Send some good thoughts Addie’s way. (And to her amazing parents, Patty and Josh!) She’s about two weeks post-op from her Fontan procedure and tricuspid valve repair. The surgery went well, but she’s still inpatient and recovering. Here’s an adorably sweet picture of her tea party with the therapy dog. We love you, sweet Addie girl!
Jaime is the mom to an amazing heart warrior named Huck. (Fun fact: Huck was Eloise’s first roommate in the cardiovascular ICU and they were born just two days apart!)